Forty-two minutes...a lifetime of love...

God's Gift...Our Angel Baby

Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.

On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.


God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.

Psalm 139:13-16

For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Monday, March 30, 2009

Happy Birthday Daddy!


Today was a difficult day for me. Hailey is doing great and remains very active, but my day was spent in and out of fog for a different reason. Today would have been my dad's 50th birthday.

My dad passed away November 21, 2008 unexpectedly in his sleep. They called it sudden cardiac arrest. He greeted his new life as he took a nap that Friday, knelt by his bed, before he was to be at dialysis. Over a year before, both of his kidney's had failed and dialysis was a must. There was no doubt that he needed a transplant, and I was more than willing to give my dad anything and everything he needed.

As we began the donation process we found it to be a lengthy one. It was also one that dad was extremely hesitant about, because he never asked anyone for anything. He was always a giver, never looking to receive, and the thought of getting my kidney scared him to death. He looked me straight in the eye, on more than one occasion, and told me "NO", I was not going to give him my kidney. And as most good children do, I would remind him that I was too old for him to tell me what I could and couldn't do anymore. This was something that I was simply going to do, and there was nothing he could do to stop me. I would assure him that I was perfectly healthy and this was not as big of a deal as he was making it out to be. We had the option to wait for a cadaver donor, but a living donor proved to be the most effective. I was his daughter, and there was nothing in this world that I would rather do for him than to help save his life.

He finally got used to the idea, partly because he knew that my chances of being able to donate were slim. He had a rare blood type that wasn't compatible with many others, and we knew that he was an 'O' and I was an 'A'. So he began to grin when I would tell him, "You'll owe me for the rest of your life you know", or, "You better take extremely good care of my kidney." But I remember how serious he was at one of the first consultation appointments when he asked the doctor if this procedure would affect me having children in the future. That was one of my questions as well. The doctor told us that many women go on to have normal pregnancies with one kidney.

As we continued the process, I received a call that my blood tests came back. They explained that although theoretically 'A's' are not compatible with 'O's' for transplants, my blood was type 2 (don't ask me what that means) and I was still a possible candidate to donate. Next they needed to bring dad in and see how his blood would react to mine. I was thrilled! Despite the slim chances we were given, there was still hope.

Throughout this time, dad's health continued to decline. It got so bad that I couldn't remember the way my dad used to be anymore. My dad was the hardest worker I knew. He was always busy doing something for someone, and he had working man's hands to prove it. He owned and operated his own business fixing furniture for local businesses in the area. He was the founder and president of the United As One, United We Sing Christian Festival. A vision that he brought to life in order for Christians to gather on the state capital grounds to sing, fellowship and worship God. A unity that is only allowed in two other states. In his spare time you could find him: mowing the lawn, even if he just mowed it two days before; building a pulpit for a church in need; organizing a Christian youth concert; setting up for a chili dinner fundraiser, which he was always the first to arrive and the last to leave; watching his son's track meet; helping a friend move; coming to his daughter's rescue when a drain backed up...the list is endless really. But towards those final months his time was beginning to fill with intense coughing, days of sleepless nights, increased medications, chest pains, and hospital visits that turned into stays.

Then we found out we were pregnant... less than a month before he passed away.

We were all so excited! The greatest joy in my dad's life was being a grandpa, and he was about as excited as we were. But lately he had been unable to pick up Ryan, and I remember telling him to hold on for another nine months. He still had to see a dentist and get some other things together before he could get a transplant, but I needed him to get healthy and stay strong. He had been on a sharp decline lately, and I became increasingly worried. He would always say, "I'm fine", just like a guy, but I knew, I knew that he wasn't. I remember telling a close friend that if something happened to him I didn't know what I would do. And then on November 21st, it did.

Just like that he was gone. He told me many times before that he was ready to go home. When it was his time, he was ready. My reply was simple, "I'm not ready for you to go anywhere." So I was shocked and confused and completely devastated. That is my dad! In many ways those feelings mimicked that day over a month ago. That is my daughter!

When I look back on my dad's life, I know that he accomplished everything God had planned for him to do in his 49 years on this earth. And when I look back on my daughter's life, I will know that she too will accomplish everything God has planned for her life as well. It's truly not the years in life that matter, but the life in years.

I miss my dad every single day. I need him more now than ever, to be here for me and to get me through this. I need his hug, which there is no comparison, and I need his voice, which holds all the right words... But I try not to be selfish. Today my dad is smiling. He is happy and healthy and living an eternity in heaven. There is no greater comfort than knowing where my dad is.

I had a pleasant visit with my dad today. I told him that even though today is his 50th birthday, he still needed to finish sanding Hailey's crib, and stain her toy chest. Although, I'm sure by now he has built her a dollhouse with every accessory to go in it, right down to the matching bath towels!

Today was a beautiful sunny day. Today was my dad's 50th birthday. And today was another blessed day with my family!

Thursday, March 26, 2009

Walk for Hailey's Hope

The past couple of weeks have been a little busy at our house, so I apologize for not writing as frequently as I'd like. However, during that time our family found yet another meaning and purpose of Hailey's life. Hailey reminded us of how precious life truly is, but it wasn't until the March of Dimes contacted us that I realized there was actually something we could do.

March of Dimes is a truly wonderful organization that is working hard to reduce the occurrence of birth defects, premature births and infant mortality by funding extensive research and education programs across the country. If I can help save even one family from receiving the same news we did, and ensure even one baby a healthy chance at life, then the pain and hurt our family suffered would all be worth it.

Our family is now fully committed to helping March of Dimes achieve their mission to prevent birth defects and infant mortality. Therefore we have dedicated team Hailey's Hope to join the thousands of compassionate teams across the country that support March for Babies. We would like to invite you to join Hailey's Hope in the walk that helps every baby have a healthy chance at life!

On Sunday, April 26, Hailey’s Hope will be participating in the March for Babies walk at Memorial Park, Jefferson City. To register for the walk, visit our team’s web page at www.marchforbabies.org/657720, click JOIN THIS TEAM at the top of the page, and you’re ready to go! You can also register at the walk. Registration starts at 12:30 p.m. and the walk kicks-off at 1:30 p.m. A $20 donation per adult is suggested, but any contribution is appreciated to help support March of Dimes in honor of Hailey.

Bring the whole family! There will be games and activities for the kids, t-shirts, and lunch will be served after the walk. Our family would be thrilled to have everyone there to honor Hailey’s life and the miracle of life for every baby!

So our beautiful baby girl is hard at work again, making sure that her purpose in this life is fulfilled. It reminds me of the Rick Warren book "The Purpose Driven Life". It's a powerful book which seeks to help you answer one simple question, "Why am I here?" Hailey continues to answer that question everyday as she brings new meaning to life. It's clear that God sent her here for more reasons than one, and helping ensure healthy lives for future babies is definitely on her 'to do' list.

SAVE THE DATE:

April 26
1:30 p.m.
Memorial Park
Jefferson City, MO

Please join us and walk for Hailey's Hope, and be a part of this special memory we will forever treasure with our daughter.

Thank you for your support and God bless!

The Glavin Family
Tim, Rachelle, Ryan and Hailey

* You can also make donations online at www.marchforbabies.org/657720 or send check donations to The Glavin Family, 904 Westwood Drive, Jefferson City, MO 65109. Please make checks payable to March of Dimes.

Monday, March 23, 2009

Truths of Life


I thought I would share some lessons in life that my daughter has proven to be true. Here are just a few, and are in no particular order...
  1. When seeking to understand; seek no further than God.
  2. "Never will I leave you; Never will I forsake you." - Hebrews 13:5
  3. God's plan is far greater than our own, so trust it.
  4. Doing what is right is not always the easiest thing to do.
  5. God blesses us the most when we least expect it.
  6. Don't take life for granted. Love, honor and cherish the time you have and the time you have with your family.
  7. Don't underestimate the power of prayer.
  8. God gives, God takes away, and God blesses our lives forever!
  9. It is okay to cry. Just remember that you are always in God's hands, and He will take care of you.
  10. Seek God when you are hurting and in pain, but remember to seek Him all the times in between.
  11. If you believe and trust in God, in the end everything will be okay.
  12. God doesn't give you more than you can bear. I have found that you learn more from the load you carry.
  13. God can do all things great and small.
  14. "What we have once enjoyed we can never lose. All that we love deeply becomes a part of us." - Helen Keller
  15. "Every good and perfect gift comes from above." - James 1:17

One of the greatest truths that I know to be true:

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you."
- Jeremiah 29:11-14


Therefore, I know that I am not alone. I know that God has a plan for me and for Hailey. I am part of hers and she is part of mine, and I am blessed! I do not need to understand what God's plan holds, simply because I know it is His plan.

Update: Hailey is one an active little girl! She keeps busy all day long, but her energy boost seems to come in the afternoon and at night. And I love it! I love being uncomfortable, I love being kicked in the bladder, and I love carrying life inside me everyday. She keeps a smile on my face, and never is there a bad day. I have too much to be thankful for.

Hailey's spirit and strength amazes me!

Thursday, March 19, 2009

Dear Mommy,

Please don't cry,
Please don't worry.
I know you will miss me,
But please, don't miss me yet.

I am still here, Mommy,
I am with you everyday.
You take me wherever you go,
And with you I will stay.

I am warm and content,
I find plenty of room to play.
I am safe with you, Mommy,
I am happy everyday.

We are not alone,
We will always have each other.
God is with us too, Mommy,
Guiding us along the way.

Be strong, Mommy,
Do not be afraid.
I am here, Mommy,
And that will never change.

I love you, Mommy,
Thank you for taking me all the way.
I love you, Mommy,
Be strong, be happy and live life with me everyday.


With love from your baby girl,

Hailey

****************************

I am not a poetic writer, so this isn't meant to rhyme. I just wrote it with a daughter's love, for her mother's comfort. When I read it, I am reminded that Hailey hasn't gone anywhere. She is safely tucked inside, and I'm going to keep her safe, and celebrate the blessing of her life for as long as God allows. I also know that Hailey will always be with me, even when we come to the crossroads on this journey. My 'good-bye' to her on this earth will be temporary, and spoken only once. For when I see her again, 'good-bye' will cease to exist.

I thank God for the gift of life. I thank Him for Hailey's life, and the life she will forever live with Him! He is an awesome God. And in our hands He entrusted the most beautiful, perfect little girl, an angel, who was created for the glory of heaven!

God blesses us the most when we least expect it.

Love,
Rachelle

Monday, March 16, 2009

Letting Go...

I'm not sure where to even start with this one...

I know that what lies ahead is going to be the hardest thing I will ever experience in my life. Last night I think I was able to pinpoint the exact moment when it's going to be the absolute worst..letting her go.

Here is a rough draft of what I picture happening in that hospital room.

Hailey's strength endures the delivery and she is immediately laid in my arms. I feel her warmth. I kiss her dark mess of hair and hold her close. I admire her beautiful face. I wrap her hand around my finger. I inspect every inch of her and she is perfect! My first words to her are, "Hi, my baby girl! This is mommy!" I go on to tell her how much I love her, how proud I am of her, and how honored I am to be her mommy. I let her know that her big brother Ryan says "Hello. He loves you and he can't wait to come in and meet you". I tell her "We did it!" That she is so strong just like her daddy, and she conquered the odds. I am blissfully happy. I got to meet my little girl. I got to hold her and love on her. I get to celebrate the life Tim and I created together, and that God blessed us with. Then I tell her everything is going to be OK. She is going to live with Jesus, and everything will be OK. Mommy and daddy will catch up with her soon, but she will never be alone. We won't leave her until Jesus comes to take her hand.

When my time is up, I cry. But I hold her close and continue to kiss her head, her cheek, her hand, and I never stop telling her I love her. I love her, I will always love her, and I will never ever forget her. She will always be with me.

Once I've gotten it together a bit, we bring in Ryan. Tim is sitting down holding Hailey. Ryan comes to sit on my lap and we talk for a minute. I read to him the book I made beforehand that explains perfectly how Jesus made Hailey extra special, an angel, and that she is going to live in heaven with Him. {I don't have the book made yet, but I'm working on it. I'm still searching for the right words.} Then we take him over to hold her hand and kiss her head. He talks to her and sings her a song. After we've had our family time, we ask for our parents to join us. I picture our moms coming in with tears rolling down their faces. They each hold her and love on her.

To lighten the mood, Tim and Ryan get the small cake we brought to celebrate Hailey's birthday. Tim lights the candle and we sing to her. We let Ryan blow out the candle since Hailey's too little, and she needs her big brother to help. What's a birthday without gifts? Ryan gives Hailey her birthday present; the 'cute boo' that he picked out for her. It's a very special gift from her big brother. Today is also a special day for Ryan because he is a big brother, and Hailey got him a little something too; a matching 'boo' in blue. Of course Ryan loves it and couldn't ask for anything better.

We laugh. We cry. We couldn't imagine trading this day for anything else in the world. We get to hold, and touch, and kiss one of God's own miracles. An angel. My baby girl.

After our parents say their 'good-byes'. Tim, Ryan and I are left alone. Ryan kisses her one last time and gives her a big hug; probably never knowing that it will be his last. Our Now I Lay Me Down to Sleep photographer is there to capture every minute we spent in that room with Hailey. Every minute that I will hold on to for the rest of my life. Ryan leaves, and Tim and I are left to say whatever is in our hearts to say to our beautiful daughter. Our amazing little girl that came and left this world all too soon. A precious and perfect gift that has changed our lives forever. An inspiration that will leave a legacy to outlast our own.

Then comes the worst part. The part that breaks me and tears me into a million pieces. The only thought of this whole day that had me crying in Tim's arms last night.

Letting go...

Hailey leaves my arms. My whole world is stripped from my embrace...by strangers. I hand her over to strangers; to never set eyes on her beautiful face again. They turn their back on me and carry my little girl away. My heart is gone. The torture and devastation we felt on the first day our journey with Hailey began, returns...multiplied by every blessed day we traveled on this journey since then.

What happens next is a blur. A whirlwind of treasured memories mixed with pain and sorrow.

I know that I will see Hailey again! I will find comfort and peace in God. He will take care of me, just like he is taking care of Hailey. She couldn't be in better hands than in the hands of God.

I will see my daughter again!

I will just have to wait.

*-*-*-*-*-*-*-*-*-*-*

"'He heals the brokenhearted and binds up their wounds." - Psalm 147:3

"'Blessed are those who mourn, for they will be comforted.'" - Matthew 5:4

"'I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.'" - John 16:33

"Never will I leave you; never will I forsake you." - Hebrews 13:5

Wednesday, March 11, 2009

Big Brother




I'd like to introduce you to Hailey's big brother, Ryan! He's the first of the two greatest gifts God has given us. As I'm sure you can tell, he's not camera shy in the least and is a very social, outgoing little man. He has also shown me just how difficult it can be for a parent to discipline their child. He has just recently started testing the waters of boy orneriness, but he's very smart and knows how to use the gifts God's blessed him with, such as his witty charm and angelic face. These things he uses to his advantage, and believe it or not it works very well on daddy! Trust me, when he doesn't get his way he goes running to Tim more than he comes to me.

It doesn't matter what kind of mood we're in, Ryan can always make us smile! He has just been a phenomenal first child from day one, you know the kind that sparks you to want a whole houseful of kids, but I remember how nervous we were when we found out we were pregnant with him. I read all the pregnancy and parenting books I could get my hands on. I bought anything and everything we thought we needed. I baby proofed every inch of the house. But when we brought him home from the hospital our mommy-daddy instincts kicked in and we were good to go. Becoming a parent has been the greatest experience of our lives, and now we are blessed to experience that amazing love and bond all over again with Hailey.

When we told Ryan he was going to be a big brother he was extremely excited! Anytime you asked him whether he wanted a baby brother or baby sister, he would always opt for a sister. But I think he even became a little nervous, just like we were with him, as he thought about how he was going to take care of a baby. So instead of books he turned to baby dolls. For about a month that's all he would play with; changing their diaper, feeding them a bottle, burping them, singing them a song, buckling them in a car seat, you name it he did it, and he was always very serious about what he was doing. I remember one time he couldn't get a baby doll to stop crying, so he brought it to me with a worried expression on his face and said, "Fix her mommy!" I guess now he thinks he's as prepared as he's ever going to be, because he hasn't played with them since - which I think put Tim's mind at ease a bit.

Just about every day Ryan will ask me, "When will Hailey come out?" I tell him that she has to stay in mommy's tummy so she can keep growing. Then when she gets big enough she will be ready to come out. When we were having Christmas with Tim's grandma, Ryan came around the corner and saw me holding the newest baby in the family. He got so excited and asked, "Is that my baby!" Two-year-olds are so much fun! They are so very inquisitive, and it amazes me at how their innocent minds work.

When Ryan and I passed the hospital a couple months ago, I told him that's where he was born. I explained that when Hailey is big enough, we would all go to the hospital and the doctors would help get her out, and then we can take her home. His response was, "Mommy, will you be sad?" It took me a minute, then I realized what he was talking about. The last time we were all at that hospital was when my dad passed away in November. He didn't forget how sad I was. I said, "No, honey we won't be sad. We will be very happy!" Now how am I going to explain my tears when we go back there?

But he really gets excited when he tells us how he's going to take care of her and push her in her stroller. I took him shopping with me last week and he picked out a 'boo' for Hailey (a bear/blanket that Ryan has always used) and the one and only 'cute' sleeper she would ever wear. As you can imagine that was extremely hard to do, but having Ryan there helped me keep it together. It also gave him the opportunity to experience the same things other big brothers get to do in preparing for a new baby.

Tim and I have debated how and when we are going to tell Ryan that Hailey most likely will not be coming home with us. Ryan is extremely bright and intuitive, and we knew that we had to be careful with how we tell him and what we say around him. We've finally decided that we are going to wait and tell him until later on down the road. We are celebrating everyday of Hailey's life and we don't want to take that away from Ryan. I just don't think he would really understand, and how could he when it was so difficult for even Tim and I to understand at first. The truth is that he's already a big brother, and he always will be. Hailey will always be his sister, just like she is our daughter, and that was a fact from day one.

So we are all rejoicing and savoring Hailey's life, and we are doing our best to not spend our time focusing on the gloom that lies ahead. I think you will find that we love talking about Hailey! We love experiencing the same joys that other parents get to experience when expecting a new baby! And we don't want to deprive ourselves, Hailey, or Ryan of that happiness. How can there be worry or pain when Ryan comes up to tickle Hailey, give her a hug, or teach her to pray. Those are the times that remind me the most of how precious and valuable each life truly is. That's also when I thank God for my family and my beautiful children. Yes, there are some things that we won't get to experience and other things that will be a different experience, but the joy and happiness is still there and that's what our family is holding on to.

Tuesday, March 10, 2009

Thank You God For Another Day!

I thought today was it!

Over the past couple of days I've noticed that Hailey's movements haven't been as frequent or as noticeable, but last night I really started to worry.

Every night before I fall asleep, I wait for Hailey's good night nudge, and last night I waited an unusually long time. When she finally gave me a faint sign, I was thrilled yet weary. It wasn't until this morning that I knew I needed to make sure she was okay. I started having these small pinching pains, and I couldn't be sure if I had even felt her move any all morning. I called Dr. Dodson's office and made an appointment for early this afternoon. The wait was nerve racking, and daylight savings time didn't help me any.

While I was getting ready it suddenly hit me, what if this is it? What if this was my last day to be with my daughter? So I cried and I prayed. I asked God for just one more day. I wasn't ready for it "to be time" yet. I was still gathering more strength for that day, and I wasn't ready.

Then I found myself in that room again. Laying on that table. Looking at that screen. This was where I had received that devastating blow exactly three weeks ago, and now I felt sure it was coming again! No, I wasn't ready.

That's when I saw her! She was beautiful! And there in the middle of my being was her fluttering heart, followed by the most beautiful sound I've ever heard. I looked up at Dr. Dodson and told her "That's all I needed to hear." To say I was relieved is an understatement. Today wasn't the day that I would loose my child! Thank you God!

I think Hailey felt my anxiety and fear, because she has been rolling, poking, and probing me ever since. My hope has been restored!

However, I now know where I'm lacking. I have the strength to live each day without continuous worry or fear of what is to come, but I still need a tremendous amount of strength for when today becomes that day. The day when my world stops.

I also struggle with not knowing if I will get the opportunity to meet my daughter while she is still alive. I so badly want her to hear my voice and feel my touch. I also want to feel her heart beating. A heart as strong, as pure, as deep, is a miracle. And to feel it beating against my own would be the closest to heaven I can get on this earth.

But I'm going with God's plan. I don't know if that plan entails Hailey going home sooner or later, but it's His plan and that's all that matters. These are my wants, but what I need is to continue trusting in Him and His plan for Hailey.

So often we forget how precious life really is. It is something we have no control over. It can be gone in a blink of an eye. It is not something to dread or fear. It is a gift, given freely by God, for us to embrace and cherish and live every minute of, and every moment we have with our family.

Thank you God for this beautiful, rainy day!

Cherishing the time they have

By Angie Hutschreider
Jefferson City News Tribune
Sunday, March 8, 2009

“I woke up today with optimism and excitement, and in a couple of hours my world was turned upside down, by confusion and an extreme form of sadness that I had never in my life felt before. My heart, my soul, my mind were in continuous torment,” Rachelle Glavin wrote.

It’s hard to imagine what a parent would do when they find out their child is sick. When that child is not yet born, and their illness is fatal, most cannot even imagine how they would react.

At 20 weeks gestation, Rachelle anxiously waited for her ultrasound, excited to find out the gender of her second child, though unusually nervous.

“My husband (Tim) did not come with me to that appointment because he did not want to know what we were having and was afraid it might slip,” Rachelle recalled. “And I was fine with that – he wanted to be surprised and I wanted to know.”

During the ultrasound, Rachelle became nervous when she noticed something seemed wrong when looking at the top of the skull. She asked the technician, and they told her the doctor would discuss it with her. That’s when she knew her mother’s intuition was right – something was wrong. And silent tears fell down her cheek.

“My heart stopped then and I called Tim and told him something was wrong.”

After being sent to a maternal-fetal specialist in Columbia, they were given the news.

The Glavins were told that their daughter, Hailey, has alobar holoprosencephaly (HPE). She was also diagnosed with full Trisomy 13, or Patau syndrome, following additional testing.

Dr. Kimberly Martin, obstetrician/gynecologist and clinical geneticist with the Center for Maternal-Fetal Care in Columbia, said Trisomy 13 occurs at conception.

“Trisomy 13 is caused by a random error that occurs during formation of the egg or sperm, resulting in the baby being conceived with an extra chromosome 13,” Martin said.

This extra chromosome 13 interferes with the formation of many major organs, especially affecting the heart and brain development. HPE causes brain and structural deformities.

While these types of chromosomal errors occur more frequently in older mothers, there is a small chance of this occurrence with any pregnancy.

“It can happen regardless of the mother’s age,” she said.

Martin, who has been in practice for nearly 16 years, said she sees one or two cases of Trisomy 13 each year.

HPE affects about one in 10,000 babies, and Trisomy 13 affects one in 3,000-6,000 babies and varies in severity. “With the severity of Hailey’s condition, she is given little chance of surviving to term,” Rachelle said.

“There is a failure for the brain to divide into a right and left brain,” she [Martin] said. “Most children will have a problem with the development of the midline of their faces.”

Not all babies with Trisomy 13 have HPE. “Sometimes,” Martin said, “the brain will appear normal, but because of the extra chromosome 13 the brain will not function normally after birth.”

Rachelle was laying in the ultrasound examining room with Tim, watching Hailey pull her legs up and move around. The experience was both exciting and confusing to the family.

Tim asked Rachelle how the baby could be moving around so much if something was wrong with her brain.

Throughout Rachelle’s pregnancy – and even now – she said she still feels healthy, which can be confusing when her unborn child is facing such odds.

“A baby’s movement, pre-birth, is a response from the lower brain and is not purposeful movement, it is reflex” she [Martin] said. “It takes some time after birth for the child to move with purpose.”

The Glavin family knows the chances are bleak for their daughter. But instead of sitting back and waiting for the inevitable to happen, Rachelle says they are embracing every moment they have with Hailey. That means positioning a bassinet in the room meant for Hailey. Arranged tiny, pastel-colored baby gifts that came early in pregnancy will be set out, all prepared for Hailey, giving Rachelle the chance to commemorate her life. And all are awaiting Hailey, should she come home.

“It will always be her room,” she said.

“I am going to touch every kick, smile at every stretch, and count every nudge my daughter blesses me with,” she said. “And I will be reminded of how precious life is, how precious Hailey is, and how God blesses us in ways we never imagined.”

Rachelle said it is her family’s faith in God that is keeping them strong, though she has moments of grief.

“I will admit that sometimes after I have counted my blessings I cry. It is hard not to because I begin to think about what tomorrow might bring,” she said.

“The unknown is something we all deal with,” she said. “The truth is none of us know. We don’t know when, where or how.”

Rachelle said while they are sad about the reality of the situation, she does not want to be sad while she still has so much to be happy for.

“I am tired of saying ‘good-bye’ before I have even said ‘hello’,” she said. “I want to be happy and enjoy the time we have with her.”

March 13 is Trisomy 13 Awareness Day.

Follow the family’s journey at www.haileyshope.blogspot.com.

Sunday, March 8, 2009

Hailey Raising Awareness of Trisomy 13



Good Morning!

I was so surprised to find Hailey's story on the front page of today's paper!

I cried and cried when I read it! It was beautifully written, and I am so proud of our little girl!

I haven't found an electronic version of the article yet, but here is the font page.

Saturday, March 7, 2009

Pick Up a Paper

Just FYI: Hailey's story will be in the Jefferson City News Tribune tomorrow, Sunday, March 8th, to help raise awareness of Trisomy 13. I will post it here as soon as I can. I can't wait to read it!

Have a good night!

Those Tough Moments

This experience with Hailey is definitely amazing and life-changing, but it's also definitely not easy. Our family has acquired the strength we need to trust in the hope for tomorrow, and to subdue the hurt and pain that we will have to face one day. However, we are human and every once in awhile that pain surfaces when I start to think about one of two things: losing Hailey, and losing that part of my life that had her in it everyday.

I think about Hailey's room that I won't get to paint and decorate in baby pink and chocolate brown. I think about the new rocking chair we got for Christmas that will never serve its intended purpose. I think about our family dinners that will remain one short of filling the table. I think about all the Kodak moments that will never be captured. I think about the braids and pony tails I'll never get to help her with. I think about the red wagon we got for Ryan to pull his little sister around at the zoo. I think about family vacations, her first day of kindergarten, her high school and college graduation, her wedding, her children...everything parents treasure with their children that we will never experience with Hailey.

Then there are other times when I think about the things no parent should ever have to contemplate, especially when you're pregnant and full of a life you want and love so much. I think about the right words I'm going to have to say to an excited little boy one day. I think about the moment Hailey's heart stops beating. I think about the first and last words I'll ever get to say to our daughter. I think about how I'm ever going to hand my little girl over to a stranger. And most of all I think about the horrendous void my arms and my heart are going to feel when I leave that hospital. A feeling that I'm sure will remain for the rest of my life.

These are those tough moments I was referring to. This is when I cry, I grieve, and I turn to God the most. I referred to these as tough 'moments', because God doesn't allow them to last hours or days, just brief moments of time to grieve over what is to come and what will never be. I like to think that these episodes of sorrow are chiseling away from the iceberg of pain that awaits.

Thankfully my strength always returns, and I remind myself that this is all part of God's plan, not my own, and that His plan is the only one I want to live by. He also has a plan for Hailey, and even though it's not the same plan I have for her, it's the plan that I trust. I also realize that the hopes and dreams I had for Hailey haven't gone away, they've only changed. They have changed to mimic the understanding of God's plan for her, and it's amazing how already she has fulfilled those hopes and dreams. Our daughter has taught us lessons in appreciating life, unconditional love, unwavering faith and endless hope. These pivotal lessons I believe are in God's plan for each one of us. These lessons can't be learned from a textbook or a philosopher. That epiphany comes from knowing God, and for us it was also knowing what a true gift and blessing Hailey is and always will be. My hope and dream now is for Hailey to grow stronger so she can meet her parents and feel our warmth and love before she goes home. I want to tell her how beautiful she is, how a parent couldn't be more proud of their child, and how much we love her and will always love her. This is the first and last moment that I hope to have with my daughter, and one that I will forever treasure experiencing with Hailey on this earth.

I felt like sharing this gloomy side of reality because one, this week for some reason I've had many of these tough moments, and two, it's a very real part of this journey. Hailey reminds me more and more every day that we're not there yet. That right here, right now she continues to grow stronger, and provides me with the hope I need for that day I get to meet my little girl face-to-face.

With Hope and Love,

Rachelle

Wednesday, March 4, 2009

Picture Time
































This is The Glavin Family; Tim, Rachelle, Ryan and Hailey!

Special thank you to Amy Knollmeyer, photographer for Now I Lay Me Down to Sleep Foundation, for volunteering her time to take these beautiful pictures for us to remember each step of our journey to Hailey!

Tuesday, March 3, 2009

Finding Strength


I've been asked many times, "How do you find the strength to get through this?"

And here's the simple truth:

"I can do all things through Christ who gives me strength." - Philippians 4:13

The astounding strength our family has found, can only be found and given by God. I've said it once and I'll say it again, I don't know where we would be without Him. It's simply hard for me to even imagine, but I would guess we would feel no hope, no joy, no tomorrow. We would probably be reliving that first day over and over, until the day came when we took the 'easy' way out. Even thinking about living in that torment of devastation every day, with nothing to hold onto, and nothing to guide you and give you peace...it's almost too much to contemplate. But unfortunately there are families out there that are unable to find the strength and hope they so desperately need to embrace the amazing blessing they have been given.

I knew God before, but not like I do now. It's hard for some people to understand how enduring so much trial and tribulation can bring you closer to loving and trusting in God - the one who gets the blame for all the grief in your life to begin with. Trying to explain this journey we are taking is difficult, but perhaps the hardest part to describe is also the most incredible, and that is the amazing closeness you have with God.

I've never once been bitter or resentful with God, and I've never asked "why?", because I knew God, and I've always put my trust in Him. This time was no different. When I prayed that night, I knew He was listening and He was right there. He heard every word and every thought, and He knew that I was not forsaking Him even at this desperate time. He knew that I loved Him unconditionally, and that my faith would always lie in Him.

It was from then on that my relationship with Him became even stronger than ever before. I feel His comfort and strength everyday. He's given us Hailey, an absolute blessing, who has taught us things we would have never known without her. Through her, He has opened us up to understanding non-worldly things like faith, life, love and hope, things that mean more than the world to us.

I don't want to come off selfish in sharing how much Hailey's condition has changed my life for the better, because I wish everyday that Hailey wasn't sick. I wish that she had a chance at a long and happy life. We had so many hopes and dreams for Hailey, and the time we would have to spend with her and Ryan. But that was our plan, not God's. I will never stop believing that God has a plan and a purpose for each of us, including Hailey. Some of us may not always understand our plan and purpose, but I understand Hailey's, and I thank God she is part of His plan for us. I also know that when it is time for her to go, she will be in a place far greater than what we had planned for her.

"Guide me in your truth and teach me, O Lord, for you are God my Savior and my HOPE is in you all day long." - Psalm 25:5

Monday, March 2, 2009

Hailey's Story...Her Life (Part 3)


I thank God for day three!


I started day three more rested and more focused. I still had more questions that needed answers, so I spent the majority of the day in front of the computer. I continued to research Hailey's condition - no cure. There is no known cause of trisomy 13 or HPE, but really knowing the cause wouldn't change anything at this point. I also researched the option on the table, never really knowing what to look for. However, everything I found made my heart heavy and made the pit of my stomach fall even deeper. It was clear that this just was not an option for me.

The rest of the day was very quiet as scattered thoughts and facts seemed to piece together. The reality of Hailey's condition was becoming a clearer picture, and I was finally able to see what I was looking at. First, Hailey had trisomy 13 and alobar holoprosencephaly. Second, this happened at day one, and there was nothing we had done to cause it. It was a random, rare miscalculation of her chromosomes. Finally, Hailey was ultimately going to die. Now what?

That night, our lives were changed forever.

At 6:00 p.m., Dr. Martin called to tell us the amnio test came back positive with trisomy 13. There was no need to have us come in to get tested, there was no need to worry about Ryan, and there was no need to worry about future pregnancies - which was not something I had even thought about. I explained to her how I felt about the clinics, that it simply was not an option. I remember reading that some hospitals assisted with terminal children and asked what they did. She explained the procedures and technicalities of it all, but it was still all the same.

Then she told me exactly what I needed to hear, "Rachelle, your other option is to continue with the pregnancy." That was it! That is what I wanted! Was I just waiting for someone to remind me of my other option? It's like the intense amount of devastation and grief we felt on that first day completely wiped out the fact we even had another option. I can't even begin to explain the relief I felt. The slate was wiped clean, and we were going to start celebrating every day of Hailey's life we had left. God had answered my prayer and we had made the right decision. The right decision for us and for Hailey. She is alive, and as her parents, we will continue to love and nurture her until God decides it's time for her to go home.

But what about when people offer their congratulations, what about setting ourselves up for more heartache later, what about passing the girls clothes or the unfinished nursery, and what about watching our daughter die. Here's my answer: Thank you for the 'congratulations' and 'well wishes'; we are excited about having a baby. Our heartache will be the same, because we are already as attached as we can get to our little girl. Every time I pass the girls clothes in the store I will be reminded that I have a daughter. Even if the nursery goes back to having a spare bed in it, it will always be Hailey's room. And what more could I ask for then to have my child peacefully die in my arms, feeling my warmth, and listening to me tell her over and over how much I love her.

We know, without a doubt, the joy that will overcome us when we lay eyes on our beautiful little girl. Whether God decides for it to be now or later, I will be blessed knowing it was God's decision and not that of our own.

God has given each of us a place and a purpose in this world, and Hailey's was made clear three days after her story here began. After three days she open our eyes to a world we had never known before. A world filled with the amazing power of faith, life and love. Three days, and our journey with Hailey had only just begun. That journey is of Hailey's Hope and one that is worth sharing with you now.

God Bless!

Rachelle

Sunday, March 1, 2009

Hailey's Story...The Option (Part 2)

Some of you may, or may not know (I most certainly didn't), that mothers in this position are given two options: try to carry the baby to term, or interrupt/terminate the pregnancy.

I'm going to try and explain now the intense mix of feelings, emotions, and thoughts that flooded our minds and our hearts. I'm just going to be honest, because believe it or not, there are parents all over the world that receive the same devastating news we did, and it's extremely difficult to fully describe the depth of emotion involved when weighing options you never expect to face...

The only option that stood out to us was interrupt the pregnancy (I don't like using the world terminate). The day had been too much for our minds to handle. We wanted the nightmare to be over. We wanted all the hurt, the pain and the grief to be taken away, and the sooner the better. The fact was we were going to loose our child. Could I go on pretending everything was OK? Could I bear a stranger telling me, "Congratulations! When are you due?" Could I allow myself, Tim and Ryan to get more and more attached to this baby when we would never bring her home? Could I pass the girls clothing section without crying? Could I ever walk down the hallway without looking in at the unfinished nursery? Could I endure all these things, and in the end watch my baby girl die in my arms? No. No we could not do that. Our minds were so thick with hurt, pain and fear that all we wanted to do was make it go away, and end this day that brought chaos and devastation to our lives. We were so selfish in wanting to end our our hurt and our pain, that we didn't fully realize it would mean ending life itself; our little girl's life.

This end to day one, is one that I deeply regret when I look back on it now. I'm embarrassed that our selfish wants and needs to end the pain got us to even consider something that Tim and I would never have even fathomed doing. However, now I understand how emotionally vulnerable parents become when placed in a situation like this. A situation that I never knew parents could face, and one that I was completely and totally unprepared for.

But I think it's important to share this, because women and parents are forced to face the same choices we were. We know what they are feeling. We know the intense amount pain and loss you experience when something you wanted and loved so much is going to be taken away. Just know that you are not alone. I pray that anyone who is facing what we are, will turn to someone who has or is taking this journey with you, will turn to family and friends for love and support, and most importantly turn to God. We absolutely couldn't imagine where we would be without Him.

Day Two

Day two is fairly easy to sum up...we were numb. All I thought about was yesterday; every word that was spoken, every decision that was made, and every thought that ran through my mind. That was it. But that evening I decided I needed answers. I needed to know more about trisomy 13. I needed to know more about holoprosencephaly. I needed to know more about this option we were given. I realized now was the time to do it while my mind was numb - and what a sweet release that was. I googled until my eyes and my head hurt. There was still so much more to know and so many questions unanswered, but my thirst had subsided for a bit.

That's when I prayed.

A lot of my research consisted of clinics we were referred to, and never was there a good thought that crossed my mind. I just could not picture myself walking through those doors and walking back out, end of story. So I prayed. The night before I had cried myself to sleep, but now I think I had so little tears left to cry that I was able to give God my whole heart. I talked to Him as if He was sitting right there next to me, and I believe He was. The conversation was intimate and honest. I told Him how sad I was and how lost and confused I was. I needed Him now more than ever before, and I desperately needed His guidance to make the right decision. My guard was down. My whole being, I placed in His hands. Words are not enough to explain what that felt like, but it was a great feeling of release and comfort.

Soon I was sound asleep. No racing thoughts. No unsettling dreams. Only sleep...
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14